A parent, Sarah O’Connor, has started her own blog drawing on her experiences with her autistic daughter, Beth. I invited her to send me some interview questions. Here they are.

SARAH:

I was never sure how to tell Beth about her autism but she in fact brought it up herself, asking why her younger brother and sister didn’t go to Irabina as she did. I told her about our support group and how other friends wished they were in it but weren’t lucky enough to have kids that were autistic like her. I have tried to make it as positive as possible and we talk about it often so that the subject isn’t ‘taboo’. Do you have any advice for parents on how to approach the subject?

DONNA:
I love the way you put it to her. I think that some kids take easily to awareness of autism. I first began hearing the word in late childhood but I thought it meant ‘withdrawn’ so didn’t really think anything of it. I was really shocked in my 20s to learn of it as a disability. I knew I was meaning deaf and struggled to read with meaning and couldn’t easily recognise what I saw and knew creating sentences with meaning was very hard but in late childhood I didn’t understand disability. My mother helped me grasp that through getting me a deformed budgie and explaining it was a ’spastic’ budgie. I had been called, among other things, ’spastic’ so this was my first understanding that animals could have disabilities and I did relate to the bird. I know some kids relate to the examples of some people being more ‘cat’ and others being more ‘dog’ or that some people brains overload like a bucket that has no holes to let out the incoming water. I think explaining autism depends on what’s in each person’s fruit salad. But definitely explaining the postitives is important and in explaining the deficits it’s important to put that in the context of differences in general and that we all have them.

It’s also important to use representational objects, pictures, mind maps, comparative lists to draw these comparisons so it’s not all just blah blah blah that loses most of its content and tumbles the rest. And you can tell such things in an indirectly confrontational manner, through social stories or addressing them to a ‘third person’. Also consider whether you’re going to deliver the info like one big ‘bomb’ or in a ‘drip feed’ of small chunks of information the person has time to accommodate and later you can pull all those pieces together into one poster or book. Plus think about what it is you’re explaining… like for me it would have helped to understand that I was meaning deaf, face blind, object blind, context blind, what tics, OCD, Exposure Anxiety and rapid cycling bipolar each were, what having gut, immune, metabolic disorders means for lifestyle, energy and information processing and how Alexithymia, dyslexia, dyspraxia, hypotonia all add to my fruit salad and alter how I need to do things and pace myself. I also think that each one of these things taught me important spiritual lessons and some of their adaptations and compensations lead to skills. So when discussing deficits its important to paint both sides of those.

And then there’s the discuss of what’s you versus the autism. So some of us have ‘autistic’ personality traits but these aren’t our autism, they might just make us appear more or less autistic than those with less ‘autistic’ personality traits. And I think any discussion of autism needs to include the person and the condition. I think there’s dangers in defining the totality of oneself by one’s condition. At the same time that doesn’t mean the condition isn’t also large part of the person’s history, context and selfhood.

SARAH:

I have spoken to you about music therapy for our kids. How important do you think that music is for children, especially autistic children?

DONNA:

It depends on the child. Some who are meaning deaf and meaning blind may have wonderful musical intelligence and its important to build on that. Also music is a foundation for receptive and expressive language patterning and it is a wonderful indirectly confrontational bridge to being social and daring communication and self expression. Giving kids opportunities to explore rhythms, movement and their own voices is really important. One of the Aspinauts, Paul Spears, is developing a music/rhythm program for kids with the working title of ‘Soundscapes’. He’s a drummer so it involves drumming co-ordinated with lights and using a range of different music sounds to create a kind of symphony effect. You can bet Beth will be on the invite list for any pilot workshop.

SARAH:

What advice can you give me now that Beth is approaching adolescence?

DONNA:

I guess the most important thing is to remember that the emotional age of an autie can be well out of sync with their physical age but also some parts of their identity can be ready for their teens whilst other parts are just getting into childhood. It’s important that girls on the spectrum understand that sexuality is not a rote learned skill and that it’s ok for them to not be ready for sexuality at the same age as non-spectrum peers. It’s important those with autism understand how to take responsibility for their bodies, look after them, befriend them and stand up for their privacy and personal space. I learned some of this through looking after a baby brother, through looking after cats and birds and pot plants. It took decades longer to take all that personally. It was like I was half in a dream in adolescence so it’s a difficult time to navigate when you’re constantly going ‘offline’.

Adolescence is also the time to practice handling random compliments and insults and try new things whilst advocating about one’s limitations. It’s important to keep a practical tone about adolescence because auties will pick that up.

SARAH:
I am leaning towards an autism specific High School even though Beth has been at mainstream Primary School with a fulltime aide. I’d like to ask your opinion on mainstream schools as opposed to special schools.
DONNA:

Again, it depends on each person. Because an autism fruit salad can also mean attachment disorders, personality disorders, co-morbid mood, anxiety, compulsive disorders, so then being in an autism specific school may not necessarily mean other children’s ‘autism fruit salad’ will be the same as one’s own child. I also think we can’t build an inclusive society if non-spectrum people don’t share classrooms with autistic peers.

SARAH:

Beth has a companion dog. She also does horse riding for the disabled and has been swimming with the dolphins. I’m a true believer in animal therapy helping people of all abilities. Do you know of any other recreational therapies that kids with autism enjoy and benefit from?

DONNA:
Skating, trampolining, dance, music, drumming, drama, art, cooking, walking groups… things that can be done with relative degrees of autonomy or solitude yet are still in parallel with others.

SARAH:

As an autie yourself is there anything that you would like to say to any parents that are reading this?

DONNA:
I guess that every person with autism is different so explore what works best with each person. Thanks for the interview Sarah and all the best with your new blog.